Like
most autism parents, I have vivid memories of when my husband and I were
informed about our son’s autism. The first official diagnosis came when
he was seven in the second grade. That was in 1993, back before all the
better diagnosing so the school district had to get a psychologist from a
hundred miles away in Minneapolis to come to Chippewa Falls WI to declare John,
autistic. She merely observed him at school for an hour or so. It
wasn’t really tough.

(Actually,
a year earlier, my mother had read a story in a magazine that described autism
and she brought it to me and said, “That’s John.”)

What
I remember most clearly were the psychologist’s words after she told us John
had autism. She said, “I don’t know if he’ll ever be able to hold down a
job or live independently.” And that was it. No advice on what we
needed to do to help John succeed in school---nothing. I also remember
that she told us that autism was so rare, that no one really knows what to
expect or to do. She added that there probably weren’t other
autistic children in our small town.

And
I cried all the way home.

After
struggling with John through third grade, I quit teaching and homeschooled
him. It worked out great. I had to design my own curriculum to work
with his special needs. We had a lot of fun each day and he did very
well. We joined a homeschool social group and that was great too.

Then
when he was 15, in 2001, another doctor re-diagnosed him as having Asperger’s. That was the latest autism discovery and I remember
the doctor being very excited about telling me. Again, despite all the
great strides they were making in autism, he had nothing else to add.
When I asked about autism, all he could tell me was that it was the fault of
the bad genes from Richard and me. His parting words were, “If we could
just get these kids through junior high hell, they might have a chance at a
life.” (And he was the best autism doctor, we were told, in Eau Claire at the time.)

My
son is high functioning. He does so many things independently and he’s
made incredible progress since he was seven, but I remember

how
isolated, confused, and helpless I felt when the experts labeled my son and
gave me no hope. There was no one I could turn to for help.

I
can only imagine how much worse it is for a parent of a child with more severe
autism. I’ve read countless stories where parents sound like they’re in
total despair. There have been a number news reports over the years where
the helplessness leads to suicide and even murder.

So
many in the medical community stand by so disinterested and offer nothing. Parents everywhere have gotten the message:
you’re on your own--till now. MEET THE AUTISM TEAM.

If
you want to see what can be done, view this. Share the stories of help,
services, and therapy. This video has a
lot of information about children both here and in the UK. It opens with photos of a 14 year old autistic boy, Jonathan
Edwards, who is emaciated and obviously
suffering from severe abdominal pain. Jon is non-verbal and in
diapers. His mother, Allison, tells us that she gets no help from
doctors. His father, Michael, reports that they can’t even get simple
tests done on their son.

Next
we hear that the Autism Team has Jon in the United States and he’s being seen by Dr. Arthur Krigsman.
Krigsman is heard saying, “He has the autism associated entercolitis.
That’s exactly what he got. Over all this is good news, not bad
news. It’s all treatable….A lot of parents say that they feel vindicated.
That they weren’t crazy. You’re not crazy.”

Next,
in a very moving scene, Jon’s mother, Allison
Edwards touches her peacefully sleeping son and asks, “Is this the first moment
in his entire life when he hasn’t felt any pain?”

Fast
forward to a scene of Jon Edwards as a greatly
improved young man. He’s smiling and his father is heard saying,
“The change in Jon has been absolutely
dramatic physically and there have been consequential mental changes in him as
well. To look at him, he is a different child. He has the physique
of a normal 14 year old child. Within three weeks of being back from New York, he was
completely out of [diapers]….We are absolutely convinced that his quality of
life has improved immeasurably.”

Then
we’re shown the members of the Autism Team which included a clinical
psychologist and a nutritional consultant, along with Dr. Krigsman.

Changing
Lives Forever

Michael Edwards: “If you have a parental
instinct that something seriously is wrong, you must go further.

The
question appears on the screen, “Do you know someone who needs our help?”

Then
there’s a photo of a boy with a horribly swollen eye
named Jack. “There are countless others like him.”

This
is what The Autism Team is all about---improving the lives of these children
and letting the world know how it’s done.

The
task is incalculable. I can imagine that there are countless thousands of
children in desperate situations right here in
the U.S.

This
is as bad as it gets, so if the Autism Team can help Jonathan Edwards, imagine
what they’ll be able to do for other children. Their message needs to be
everywhere on the Internet. We need to share this. What was done
for Jon can be done for others. These children deserve nothing
less. There is help. Lives can improve. The
time is now.

WE
NEED THE AUTISM TEAM-CHANGING LIVES ON U.S. TV

I
asked Polly Tommey why viewing the video is so important. Here is her response:

“Help
one child to help a million others. Open the world of autism up to those who
don’t know. The TV networks in the U.S. need
numbers and we have to prove that autism is an issue that people are interested
in so they’ll be willing to broadcast this series.”

YOU
CAN HELP!

“Please
watch the trailer, Changing Lives, and send the link to everyone you know. Ask
them to watch and share this video. –The number of hits on this video matters.
By doing this, you will be helping a
great many families that urgently need support.”

For
more details on Jonathan Edwards, I went to Allison, his mother. This is her son’s story.

Jon was diagnosed with autism on his second
birthday, corroborated 3 months later following a full assessment and I was left, from then on to search out and fight for the services he
required.
State provision at the age of two barely changed as he grew but mainly centred
around
his learning difficulties and how to get Jon to respond.

He needed his diapers changed up to eight times a day, occasionally whilst
distracted dealing
with the rest of the family's needs, to my horror he managed to eat his pads and contents. I had to battle the great bureaucratic machine's providers, the passionate seeking compassion for Jon,
it was ridiculous, as if no-one cared. I became quite a campaignerdespite being accused of being 'lazy', to get him out of pads, his autism was blamed for most things, I was blamed for the rest... (Read the rest of the story HERE.)

I
asked Polly Tommey, shown on the video, about
how the Autism Team got started. This is her answer.,

Fourteen years ago we agreed, as a family, to
talk about our son Billy, who atthe time had a recent diagnosis of severe
autism with severe speech delay andbehavioral issues, on a well known news
programme. For us as his parents, there was little help
or knowledge about hiscondition so we felt we had nothing to lose. Billy
was totally lost in hisown world, the boy we once knew had gone.
Billy was sick. He suffered fromdiarrhoea, his hair was falling out, he had
frequent bouts of projectilevomiting, a big bloated tummy, he thrashed
his head against the floor andwalls 24/7 and had no idea we were his
parents - the list goes on. We wereat our wits end and desperate.

It was after the programme aired that I
realised the sheer extent of theproblem and actually how many of us parents
were out there. We were inundated with emails and letters from
desperate parents with very sickchildren.

Soon after Billy’s diagnosis and knowing
nothing about autism or how tohelp,our son, Jon (my husband) threw himself
into research and booked animmediate flight to the USA for
a Defeat Autism Now (DAN)conference. I pur all the letters I had received into a then,
simple newsletter and called

it, The Autism File and hoped for the best -
that somehow between us all we

could work out how to help our children.

The Autism File is now out of my garden shed
and properly managed by

Belvoir Publications and I continue to be the
Editor In Chief. It's run by a

fabulous team and still strives to educate
and support families around the

world.

With the success of the magazine came
campaigns, television and press

around autism and associated disorders. With
every press interview I did, every

meeting at Downing
Street, every issue of Autism File, there came the same

ongoing problem - I was getting inundated
with phone calls and emails from

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My son is one of triplets and is the only one with autism. He's non-verbal and things have gone from bad to worse as he's gotten older. We were seeing a GI specialist, and on our 3rd visit, he had a meltdown (not a tantrum). The office was so busy, I was just trying to get him to a quiet place. The waiting room was so loud he pulled my ponytail and I came down to the floor (at this time he's 10 yo and about 100 lbs, about 5' tall). After that he started banging his head on the wall. SIX people came out from the examining rooms and took him away from me. This is a specialist from UPMC Children's Hospital. This was a child in severe pain and fear was coming in a big way. The doctor had seen him before and knew how aggressive he could get when he's in pain. They called police, ambulance and then finally I saw that he had found a room filled with toys. He was calm but uncomfortable. The ambulance driver said to me "let's go to Children's Hospital ER, they know what to do. We better leave before these people do something stupid". We got to the ER at Children's Hospital and within 20 minutes, they'd given him a sedative, a heavy blanket, and a portable DVD player with his favorite movie, and they'd x-rayed him. All this took such a toll on us (mostly me, his mom). Why????? We are one of those families that NEED HELP. Nobody has helped or reassured him or me. It's been two years, and we are seeing a doctor at the same hospital. Will they be more empathetic or just as ignorant? It is so worth a try since my son is now 12. Maybe these past few years has brought more education to these people. His GI problems have gotten so bad that there's holes in the wall (in just about every room) where he has pounded his head over and over again. He's in pain, and nothing we've done has taken it away. At least that's what we think, since he can't tell us. If there's anyone out there who has had similar experiences, what did you do? How did you get the right help? We are desperate.

I have been fortunate to talk to many parents who have walked the road I am now on. Like my wife and I, they had to fight the same battles we have. They did not have the internet or the significant pressence of the autism community as a sounding board or support system.

They were unfortunate pioneers.

And yet, these families have done amazingly well for their children.

Anne's journey really reminds me of Sue Lettuere and Joyce and Ed Alger. These people not only slogged through for their kids but have helped those who came after them.

And now we see some doctors, like Dr. Krigsman doing really great work on the A-Team.

We all have these dreadful stories following our childrens' diagnoses. The Medical College of Georgia shrinks told us that Joshua had an IQ below 50 and would most likely never improve. They said we should move to north Carolina because there were better services there and our area had little to offer him. That was the year 2000. That was the year I traveled to the NVIC international conference. That was the year I met so many people with the same story. It was the time my whole life changed.
Maurine

We seem to have a better Health system in some ways here in Australia. Our son was diagnosed with Autism at age 10 months, we had a very astute family doctor and a great Paediatrician. He's starting High School next year, he has weekly therapy and a low dose mood stabilizer daily. He's in the top classes for Maths and Science. He's quirky and we love that about him.

Me too Anne... brought him home to do biomedical, homeschool, and RDI and he is thriving well now at 13. An 8 year road to recovery. Reacted to his 4th DTaP... so happy about what the A-Team is doing for our kids! Love, love, love you A-Team! Thank you Anne Dachel.

I hate autism. Our son was diagnosed almost 6 years ago: autism. No guidance from any professionals- they gave me the effin holland poem though. Also, we got virtually no early intervention. Our medicaid paid for speech and OT, so that was it. Made lots of progress in those 6 years but by god has it been slow, so now we have an almost 8 year old with severe autism.

"Go home and have a cup of tea"..is what we were told when we asked his diagnosis ..were still fighting to get normality back in our sons life ..dont listen to anything .GOV,.NAS,.DOH..all Pharma Lies ..SHAME ON THEM!!

I remember when the elder of my two autistic sons was "diagnosed" in 1996. We had taken him to the local school district's special ed facility for evaluation. The teacher observed him for about 30 seconds and said: "He looks like he has autism; we're getting all kind of these kids now and we don't know where they're coming from." Meanwhile, our pediatrician and psychologist assured us that he and his brother were not autistic, that we should allow them to watch lots of videos with speech and music and they would get better. We're still waitng for the promised improvement.

John they should have been from the DPT crap in the late 70s and 80s.
Surely they can't be so foolish to have parents go on strike with the DPT and then start adding urabe vaccines and so many other vaccine for every disease they could think of to add the mix.

I remember being phoned out of the blue (autumn 1995) by someone who might loosely be called a health officer to tell us that our son was almost certainly autistic but not to worry because there were plenty of excellent special schools in the locality. Events followed which even now are too traumatic to repeat. To be fair I think that some of the local medical/educational officials were trying to protect us from certain things (and we were not immediately grateful) but it was a terrible mess and the grief was appalling. It was also the case that despite the original un-reassuring assurance, they were no better geared for coping than we were.